For wanting the doctor to continue with the epilepsy medication

[Coffeep]

My daughter is 7 and has suffered from epilepsy since a very young age. Its well under control with medication. About 3 years ago the consultant tried to wean her off the medication as she had been seizure free but that didn't work. He is now suggesting we try again but i am rather nervous incase she has * *seizures again. Could i request we continue the treatment. I am worried the doctor might see me as challenging him

Hi, we were in exactly your position several years ago. We refused to take our son (nocturnal epilepsy since birth) off keppra. I was literally terrified of something happening to him. That fear impacted everything in my life (just telling you this so you understand how much I felt your fear). Anyway, he was on meds from age 4 (took years to get him a diagnosis even though I’d been saying he was having seizures since he was 6 months old) until he was 12. I refused to take him off his meds. Even arguing with the consultant over it. In the end, I agreed to let him grow out of his dose so that it was no longer effective but it allowed for a long slow withdrawal. Then we titrated down gradually.
He’s now 16.5 and didn’t have another seizure. The meds always made him feel awful and looking back I can see the black rings under his eyes from the keppra. He looks glowing now in the way he did before he went on keppra. If it is any help, I’ve always given him a 1000mg fish oil, a magnesium and a full spectrum vitamin and mineral supplement in the hope of supporting his brain function.
I really do understand how terrifying this is and how much it impacts on the whole family. Don’t do it until you feel ready but equally it’s unfair to never try it given that those epilepsy meds are strong for their little bodies.

I understand your fear, my 4 year old was due to be weaned off her meds in December after two years on medication for focal epilepsy- however she suffered 2 minor seizures last month which means she isnt eligible for at least another 2 years.

I know it's scary- will they carry out an eeg before they consider weaning off the meds? They wont take her off cold turkey, it will be gradual and monitored.

Thanks, comforting to know.
They did an eeg when she first had seizures and that showed
epilepsy. About 2 years later when they tried to wean her off her meds she had further seizures and the doctor send her for another eeg and this one was fine. So i don't know.
Last time we reduced her dose every 2 weeks but the seizures restarted quickly. i am worried now if something happens in schools. the meds don't see to be having any particular side effects with her.

So we had an eeg when first diagnosed (and an mri), we then had another in July last year when they first considered taking her off but the results were boardline, and before the set back we were informed that they would have done another in december before removing her.

It's never good to keep a child on medication for too long, I would think it's best to do it now whilst so young- (i.e. always with someone, watched in primary school, doesnt travel home alone yet). I would request another eeg before they consider removing the meds, they will do it slowly, perhaps get a seizure sensor for under her bed to alert you in case she has one at night. I completely get your apprehension but I would follow the drs advice.

my dd has been taking epilepsy medication since she was 5. she is now and adult. she has not had a seizure in years. the advice we have been given is to keep her on it just in case. she is on the lowest dose.
that was a neurologist.

I have had epilepsy all my life and had an operation 6 years ago. I have been seizure free since then. My meds have been cut in half roughly but I got to a stage where I said no more reductions as I didn't want to take a chance of another seizure. The consultant was OK with this but I am in my fifties so it may be different for a child.